Shortly after midnight on Saturday my daughter and her friend gave me this beautiful card case to hold my business cards.

Sunday was my seven year anniversary as a Breast Cancer Survivor. On Friday, I ordered a cake for myself to celebrate this day. I don’t really drink, I don’t do drugs and I have never smoked and I still got cancer… so yes I eat sugar.

I asked my closest friend in California, (who was literally the first person to hear the news as the Doctor called me at work) to come over and celebrate with me.

The day started out a little later than I had planned, I was running late for church and the chapel that I attend is very small and difficult to sneak in late. I decided to go to the church that we belonged to when we first moved here (and during my treatment) as their mass starts 15 minutes later. This parish had been talking and planning and raising money to build a new church when we became members. I do believe things happen for a reason and as I sat in the church I became very reflective on the past 7 years. I sat in the old church and prayed to heal and survive when I was sick. Now 7 years later I sat in this new church and so thankful that I am still here.

Cancer changed my life forever, not all bad, but changed nonetheless. I am healed on the outside, but sometimes the emotional side still creeps up on me. A few months back I had a “touch-up” procedure done. Before I left work for the appointment I looked at myself in the mirror and thought outwardly, most people that I meet now, have no idea that I am a cancer survivor. My hair has grown in and they can’t tell that it is much thinner than before. My eyebrows and my eyelashes have grown back and my eyelashes hold mascara again. My scars are not visible when I am dressed. People cannot see the effects of the aromatase inhibitors. But as I lay on the table with the greatest leopard hospital gown on… the tears started streaming down my face. I was back 7 years ago as they wheeled me into the operating room to remove a part of my body. I have learned we must allow ourselves to honor these moments as part of the healing process too.

Today the tears streamed down my face again, so many emotions. Happiness that I am still here, gratefulness for all of the people that supported, prayed and helped me. Sadness for many of the people that I met because of the cancer that are not here anymore. I wrote and delivered a note to another close friend at that time, who had helped me with the kids. Our lives have now taken us in different directions. I sent a thank you text to Lou for supporting me during my treatment. We were close to divorcing in 2006 and then I was diagnosed. We decided to stay together. We tried for another 5 years, but it just was not meant to be.

After honoring those few moments of tears and emotions I was off to enjoy my day. I walked my favorite island and visited my friend who is still recovering from a freak illness. He congratulated me and then asked “did you think you would be sitting here 7 years later?” “Honestly, I was not sure, but my Doctors were.” was my response. They told me it would be 12-18 months of hell and then I would have a greater risk driving on the freeways.

I treated myself to one of my favorite childhood candies while relaxing for a pedicure.

My friend and her daughter came over and we celebrated our friendship… and the girls ate CAKE!

The only part missing in the day was seeing my Dante. This was his weekend with his Dad and his future Step-Mother. Other than that…

or perhaps just why I write, and why I think it’s worth trying to turn part of the blog into a book.

I know I’ve covered this before: I work things out as I write, I find out what I think and feel about something as I write, and it’s a form of therapy for me. As I was reading the wonderful Anne Lamott book, Bird By Bird: Some Instructions on Writing and Life, so many things rang true for me. I love the following quote:

this is another reason people write: people need us, to mirror for them and for each other without distortion . . . to say “This is who we are.”

I am only one version of Who We Are. There are billions more, but they don’t all write. I hope to write my book to not only have a voice, to give myself a voice for what I have and am going through, but also in the hopes that I may strike a chord with people — either to help people understand what it’s like living with Stage IV breast cancer or for those with Stage IV breast cancer. Perhaps those with metastatic breast cancer will be able to read it and recognize some of themselves in it. Perhaps they won’t feel so lonely and out-of-touch with the healthy world. Perhaps they will have some “AHA!” moments, moments that give them a connection to someone else, even if it’s through the pages of a book. Perhaps all of that will help someone as they delve into their own journey with metastatic cancer.

I hope so, anyways. I know when someone has written something, whether in blog or book, that I can relate to on a deep level, it’s helped me. I know that when I was first diagnosed with Stage IV Inflammatory Breast Cancer, a very rare cancer, I felt alone. I had breast cancer but it was a different cancer than the usual — Invasive Ductal Carcinoma — so there were some things that I couldn’t relate to with women who have IDC. I know that when I first met women online, a few of the women on Mothers With Cancer who also have IBC, I felt like I wasn’t so alone in the world anymore; I didn’t feel so very lonely in my disease.

As a woman, and especially as a mother with a disease like this, that was a gift. I hate that anyone has this disease, I really do. It’s a club none of us want to be members of; it’s a club that we wish and pray had zero members; but it’s a club that, if we have to be a part of it, we don’t want to be in it all by ourselves. I feel an instant comaraderie with these sisters in IBC, a feeling of “yes, you know . . . . you know.” How I wish they didn’t . . . . but how it helps me that they do. That’s just another one of the contradictions of having cancer.

Writing for me is a balm to an uneasy soul, a way to start mending a broken heart. It helps me in ways that I’m not even sure I know about yet. It fills me up and it lets things out, things that if kept inside of me will fester and rot and perhaps become bitter. It’s helped me in learning to Let Go.

It’s a strange journey, going through old blog posts to see what will remain in the book, what won’t, and what needs to be re-worked a bit for clarification. It’s kind of like looking at old home movies, remembering where you were in life at that time, going through those emotions again. Some of it is painful and some of it is joyous, but all of it is mine. My journey, my feelings, my mistakes, my triumphs, my sadness, my joy, my tears, my laughter. Regardless of what has happened and some of the pain that’s been in the journey, I own it. It’s mine . . . but it might strike a chord with others as well. If it does, if it helps even one person . . . well, then I’m glad. I can’t bring myself to say that it’s all been worth it because I still wish I had never had this cancer. I don’t know that I’ll ever be grateful for the cancer, even as I’m grateful for some of the lessons I’ve learned along the way. Yet another paradox of living with metastatic cancer.

I look at the woman I was when I was going through cancer the first time, and she teaches me things. On the other hand, I can see how much I’ve changed, learned, and grown. It’s bittersweet. It’s taught me how very precious and beautiful life is, but the lessons have come at a cost.

I’ve learned — and continue to learn — so very much, and so I write . . . .

I write.
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Cross-posted to Just Enjoy Him.

I can’t sleep tonight. Thoughts swirl around my mind — the cancer, the hope, the fear, our lives. Our lives are not composed solely of cancer, but cancer can’t seem to NOT permeate nearly every aspect of our existence. I am a person. I used to be “just” a mom, wife, librarian — someone who could exist amongst the world of the healthy people, living with certain words describing me and not being Someone Who Has Cancer . . . Stage IV Cancer, at that.

*sigh* I hate cancer. I hate the way it robs of of things in our lives even when we’re living and I hate how it robs people of their very lives, the way it will most likely rob me of my life before I’m ready to leave this earth.

So I can’t sleep. Despite my best efforts: despite Angry Birds and Facebook and turning the light off to go to sleep, and trying to relax, my mind won’t stop tonight. It’s full of thoughts of friends who are sick and friends who have died and my good friend’s mother who died and my father who died many years ago and so many people who have died of this terrible disease, cancer, in its many many forms.

I think and I sigh. I know both oncologists that I’ve seen have told me that many woman live many years with the kind of cancer that I have, I know this . . . . but I didn’t have the courage either time to ask what “many years” meant because I have a suspicion that “many years” to me may be a totally different thing to the oncologists. So I live in some kind of suspension, thinking, hoping I can beat the odds AGAIN and live a long time. Yet at the same time I project into the future and always think of how old Energy Boy will be when it’s time to quit the treatments, when it’s time to call in hospice, when it’s time.

When it’s time.

I don’t know if it will ever be enough time, not with Absent Minded Professor and especially not with EB, for raising a child is really a life-long job that moms never quit doing. That they never want to quit doing. It’s the best thing I’ve done, being a mother. He’s the best part of my life, he and AMP. I don’t want to quit at some time just because cancer has worn down my body and made it time to quit.
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I think people expect certain things of me. I think people expect me to be “up” because most of the time the world sees my smile and not my tears. I think people want me to be a fighter when sometimes I just wish I could call on someone else to fight for me, just to give me some rest. I think people want me to be able to do all the things I used to do when the reality is that my energy level and stamina are so much worse than they were Before Cancer. I may now have hair and I may “look good,” but the fact is that I still have cancer and even if I don’t go into the Chemo Room for infusions, I’m still on chemotherapy; it just comes in pill form.

I think people think I’m brave when I feel anything but. I think people people think it’s wonderful that I’m working full-time when all I can think about work is how much it saps my energy and how I have nothing left for my home life . . . and how sad that makes me. And I think there are some people (not many, but some) who wish I would just stop talking, stop writing, stop sharing my life so openly.

But that’s not me.

This — the sharing, the late-night posting, the telling of fears and vulnerabilities — that’s me, and I’m not ashamed that’s me; in fact, I’m proud that’s me. I’m proud that I can work things out online, that I can think out loud, live out loud, and put it down on the computer screen while I’m thinking things, that I can figure things out as I’m typing the very words that you now see.

That’s me.

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The house would be quiet if it weren’t for AMP snoring like a freight train. The air just went on again so I hear the whir of the air coming through the vents, keeping us cool when it’s hot outside. I wish I could take a short walk or wake someone up to get together and chat over coffee (decafe for me, at this hour) or tea and just talk about life and be witnesses to each others’ lives. I write this down so any readers can witness my life; the thing is, I don’t know about most of the witnesses. I just keep writing and assuming people are, if not drawn in, at least interested in the mundane and not-so-mundane parts of my life.

I am tired. I am tired most of the time, but if I stay up late like this, of course I’ll be extra-tired the next day. However, when the old beast Insomnia comes and keeps me up, it makes this sleep stuff difficult.

people often tell me. “If I didn’t know you had cancer, I wouldn’t think you were sick at all,” one person said.

One of the great ironies of my cancer is that I look fine, healthy in fact, yet I have this insidious breast cancer that metastasized to my liver. In fact, the sicker I’ve gotten, the healthier I’ve looked because the one main physical manifestation of cancer — hair loss — isn’t there any more. My hair started growing back while I was on the second chemo, navelbine and herceptin, and has continued to grow back while I’m on this new regimen, tykerb and xeloda.

Also, besides the fatigue, which just seems to be a constant with all cancer treatment, I’m doing OK. So far, I don’t have nausea, diarrhea, or rashes on my hands and feet, which are possible side effects listed for this chemo.

I just also have no idea if it’s working.

There are those who believe that if I feel good and am “doing so well” on this chemo, it must be a good thing, I must be responding to the chemo. However, since I felt good (except for the fatigue) on the navelbine/herceptin mix, I know that’s not necessarily true.

In fact, I don’t seem to know what’s true anymore, as far as chemo treatment goes. I can’t predict this one. In a big way, I’m afraid to predict this one because the last two didn’t work and those failures were devastating. Not only did they not work, the cancer got worse throughout each treatment. Not fun, not fun at all.

I’m just trying my best out here, wanting to be and remain the best mother I can be to Energy Boy, wanting to stick around for him and for me so I can see him growing up.

I look fine. I feel pretty good (aside from fatigue and neuropathy in my hands). But the truth is that I’m sick.

I hate being sick. I hate this uncertainty. I need to get back to a place where I put my faith and trust into God, no matter what the outcome. I had that once; I need to get it back.

I love this song, “Keep You Safe.” I love the melody, I love the lyrics, I love the idea that we can indeed keep our child(ren) safe from all the bad things, from dangers lurking in the world.

However, life has taught me that we really can’t make such promises to our kids. So much is beyond our control. So much of my life right now consists of things I didn’t — and wouldn’t — choose for myself or my family. I can’t even promise my child I’ll be here for him because I don’t know the route this cancer is going to take. I may not get to do the things I want to do: see Energy Boy grow up, go to college, marry (if he chooses), have children (if he chooses). I want to dance at his wedding, but if I’m being honest with myself, I probably won’t live that long. Of course, you never know and it might happen, but . . . . *sigh*, it’s unlikely.

It makes me sad. It makes me sad that I don’t have the naivete that the writer(s) of this song did, to be able to put into song that they’ll keep their children safe.

I miss that naivete, that unfettered belief that I’ll grow old, for chances are that I won’t. I think of that every time someone talks about growing old. I keep quiet about it, but I think about it every time.

I wish I could grow old. I wish I could make promises to my son about being around for him. And I sorely wish I could promise to keep him safe.

But I can’t. No one can, really, but those of us who live with terminal illnesses know this better than most.

Quiet your heart
It’s just a dream
Go back to sleep

I’ll be right here
I’ll stay awake
As long as you need me

To slay all the dragons
And keep out the monsters
I’m watching over you

My love is a light
Driving away all of your fear
So don’t be afraid
Remember I made a promise to keep you safe

You’ll have your own battles to fight
When you are older
You’ll find yourself frozen inside
But always remember…

If you feel alone facing the giants
And you don’t know what to do…

My love is a light
Driving away all of your fear
So don’t be afraid
Remember I made a promise to keep you…
Safe

My love is a light
Driving away all of your fear
So don’t be afraid
Remember I made a promise to keep you safe

____________________________________________________________Note: this is not me “giving up.” This is my reality, and the reality of many parents who sadly have terminal illnesses.

The only thing I would say is that prior to the week, my only concern was that I had it so hyped up in my mind that there was no way it could have reached my expectations. My concern was needless; it not only reached, but it exceeded, my expectations. What a special week. I miss it, I miss all my LPHOH buddies from that week. A LOT.

Tonight I will dream of eggs that have names, children (and adults) running and playing, CatchPhrase (?), balconies, amazing volunteers, Melissa’s cool prayers, and beautiful, strong women and their loving, supportive men. It’s been a good day y’all, and we continue to be blessed. God’s grace is abundant here at Kure Beach, NC.

Judy is right now enjoying a boat cruise with the group. Taking pictures now on my camera; those will be uploaded and posted when I get home. Still having a wonderful time, making great new friends, and loving life. 🙂

May 17, 8:55 p.m.

I am tired (but a good tired). I am grateful. I am nourished, body and soul. I am relaxed. I am loved. I am blessed.

May 18, 1:49 p.m.

Energy Boy is a natural at stand-up paddle-boarding. Me? Not so much (to put it mildly). But, I TRIED, and that’s the important thing.

May 18, 8:32 p.m.

I love the brightly colored houses here. EB says it’s like “being in a crayon box.” My favorite is lime green, EB’s is orange, and Absent Minded Professor doesn’t have a favorite.

May 18, 8:36 p.m.

Tonight was Date Night. All the couples got a free dinner at a wonderful seafood restaurant in Carolina Beach (big shout-out to Michael’s Seafood Restaurant) and the amazing volunteers watched the kids. Big Fun.

May 19, 3:08 a.m.

Restless. Steroids? The excitement of the week? My *ouch* dagnab shoulder that I hurt yesterday? Dunno, but will try to get back to sleep after I step outside onto the (unlocked) balcony and look at the sky. There is always time for that here.

May 19, 7:32 a.m.

Today we’re going to Fort Fisher State Park. A professional photographer will be there to take pictures of each family/couple, then we’ll have fun on the beach and then we’ll have a picnic there. More later. 🙂 [big shout-out here to Sara-Anne Photography. Absolutely beautiful photos, kick-butt photographer. Love her!]

May 19, 3:52 p.m.

Energy Boy went jetskiing today with Tim, Bobby, and Rayne. Thanks so much for taking him and taking such good care of him!

May 19, 9:08 p.m.

Another awesome day comes to an end. Tomorrow is the last day of the retreat then we head home on Sat. Boo — can’t I take all my new friends home with me? :). On the bright side, I’ll never forget this week and the kindness of so many people. Also, I will carry each retreat participant and volunteer in my heart forever. Love you all. ♥

May 20, 7:51 a.m.

Back at Kate’s Pancake House before the activities with the group. YUMMY!

My new hat says, “Not all who wander are lost.” Phew!, that’s a good thing for me. 😉

May 20, 4:29 p.m.

This afternoon, Absent Minded Professor, Energy Boy and I went to the aquarium. Wonderful. Tonight we’ll have a grill-out with retreat friends (that’s participants and volunteers) and some kind of special send-off for those of us who are participants. *sigh* I’ll be sad to leave. It’s been SUCH a fantastic week.

May 20, 9:16 p.m.

God’s hand has been in this Little Pink Houses of Hope beach retreat week from start to finish. What a great week, what amazing friends we’ve made. We said our good-byes, but it’s not good-bye forever. It can’t be with people who have touched your heart and soul in an indescribable way. My heart is full-to-bursting; I thank the good Lord for this week and these wonderful people. ♥ ♥

May 21, 6:31 a.m.

Sad to leave such amazing peeps, but still happy. Happy to have been here for this incredible week, happy to have spent quality time with my family, happy to have meet such amazing, wonderful, life-long friends. Happy to have such beautiful memories and happy to be a part of the Little Pink family. Happy . . . and blessed beyond measure. Thank you, Little Pink.

May 21, 9:46 a.m.
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Every day holds the possibility of miracles. ~ church sign

May 21, 10:08 a.m.

Ahh, my stoic Norwegian side was out last night. Now I’m wistful and sad, yet so very uplifted by the week — if that makes any sense at all. *sigh* I miss all the LPHOH Kure Beach folks oodles and oodles.

May 21, 8:31 p.m.

We’re Home!
1. Home again, home again. 2. My church small group is AWESOME! We came home to new flowers in the flower beds, small ditches that AMP’s car had made filled in and covered with gravel, EB’s room cleaned, the living room cleaned . . . and I know I’m forgetting things. 3. And someone — don’t know yet who — has fixed our falling-apart bathtub. That could be my brother-in-law since he was talking about how he could do it if we were gone long enough. I’ll find out soon enough. 4. This is all amazing after an amazing trip. I feel extremely loved.

May 22, 9:18 a.m.

And we discovered that EB’s bed is new. His old one is outside waiting to be put in trash or whatever. I am . . . . OVERWHELMED. As Frank says, the blessings keep coming. Wow, just wow.

May 22, 3:40 p.m.
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1. I was so overwhelmed with emotion (in a good way) from this past week at Kure Beach and from what people did for us when we were gone that I got all verklempt during communion at church and tears were streaming down my cheeks. Good tears, tears of gratitude. Life is good, God is great. 2. I had something else, but it’s gone. Heh. Such is the life of a woman with Chemo Brain.

May 22, 6:08 p.m.

Judy needs to blog . . . . but is still processing . . . . .

May 24, 9:03 a.m.

I’m starting to blog about my week with Little Pink Houses of Hope. Words can never fully describe such an amazing week, but I’ll try to at least come close. 🙂

I have Stage IV Inflammatory Breast Cancer. For new readers, I was first diagnosed in late Dec. 2007/early Jan. 2008. I went into remission in Dec. 2008, and found out I had a recurrence of the cancer in Nov. 2010. I’ve been back in once/week treatment since early Nov. 2010.

I’m also a mom. I have a nine year old THRIVING son who we adopted from Vietnam when he was four months old.

Is this what I would have chosen for us, me with cancer? No, of course not. But life can change on a dime, and when I received that diagnosis of Stage IV cancer, I was understandably devastated.

My son is a bright, imaginative, loving boy. Has he been affected by my cancer? Of course. Any child with a parent who’s ill in any way will be affected by it. Am I a worse mother because of it? No, not at all. In fact, in some ways I might be a better mother because I know how fragile life really is and I truly enjoy and cherish our times together. I try to make memories for him because the truth is that I really don’t know how long I’ll have on this earth.

But, you know what? None of us do. Nobody knows if a heart attack will come and steal his/her life, if cancer will be diagnosed, if a stroke will happen, if he/she will get in some fatal accident. Life itself is a terminal condition. It’s just that those of us with terminal conditions probably understand that more than most people.

I was and am outraged by Alaina Giordano’s story: she’s a woman who has had Stage IV breast cancer for 4 years. She and her husband filed for divorce in Aug. 2010, and he filed for sole custody. He won, partly because Alaina has Stage IV breast cancer and the judge, a woman, said that:

You know what? I don’t know when I’ll die, but that doesn’t make me a worse mother. My son isn’t suffering unduly from my cancer. It’s simply a part of our lives now, and if he’s learned anything from this, they are positive lessons. He’s learned that we need to reach out to others to get through this, for practical things (babysitting when I felt too sick to watch him, meals, people getting our groceries for us) and for emotional support. He’s learned that a strong faith in God and an amazing church family helps get us through this. He’s learned that we rely on others for practical and emotional support, whether those others are family members, friends, or church family.

Energy Boy and I are close, very close. He and Absent Minded Professor are close too. It breaks my heart to think that I might be taken from him before I’m ready, before he’s ready. But it would break my heart even more if he were, in essence, taken from me due to a custody battle while I was still living and could be a positive influence in his life, could raise him into the man he can be. You know what would be worse, though? How it would affect him.

Now, as an adoptee, Energy Boy would probably be affected a bit more than biological children would be, but any child would be affected by being taken away from a loving, caring mother. Alaina Giordano was not ruled an unfit mother; she’s simply a mother who happens to have Stage IV breast cancer, something that I’m sure she wouldn’t have chosen for herself.

But it happened to her. It happened to me. It could happen to anyone; nobody is immune from life’s tragedies, illnesses, difficulties. NO ONE.

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